Submitted by Larry (not verified) on Thu, 06/26/2008 - 5:05pm.
My severe head pain started late February 2008. At the time I had a sinus infection that my General Practioner (GP) treated with antibiotics. After antibiotic treatment my severe head pain remained but sinus infection went away. I was sent to ENT to see if I was a candidate for sinus surgery. ENT after several visits and CT scan of sinus said my head pain was likely not sinus related. I was sent to neurologist who performed a sleep study and said I had sleep apnea. I also was searching the internet for severe head pain and all web sites were about migrains, tension headaches etc. but no reference to SIH. This was all I could take because my head pain was severe and so bad on some days I had to miss work (I do a great deal of traveling by air). I insisted my GP do a spinal tap to see if I had a brain infection. He also ordered an MRI without contrast of my head and neck. All tests were negative. I then insisted my GP refer me to Mayo. I arrived at Mayo on June 4th and they did an MRI with contrast and found the problem (SIH). It only took 2 days. My brain was sinking in my skull and I had two areas of fluid accumulation on the top of my brain. Next Mayo ordered a meylogram (dye injected into spinal cord with CT scan) to find location of leak. They said once it is found, they could do a blood patch or use fibrin glue or surgery as last resort. Meylogram showed no leak in visible part of spinal cord but there was a suspicious area in the part of the spinal cord inside the brain. I met with a neurosurgeon at Mayo to review meylogram results and he said they cannot do a blood patch or surgery in that part of my spinal cord as risks outweigh gain. I go back to Mayo on July 28th for a cisternogram with pledgets. If the leak is indeed in the brain, Mayo will try a general blood patch (however they indicate it generally is not successful unless blood can be injected at the site of the leak) but it is worth a try. In the meantime I was ordered to seek bed rest for the next 6 weeks to see if it heals on its own. The last two days I have developed nausea, and numbness in my left arm and leg. The severe head pain, sore neck, sore eyes and loss of hearing remain even when lying down. My heart goes out to all of you currently suffering from SIH and for those who have suffered and recovered. It finally felt good to get a diagnosis but I am still searching for my own recovery and I hope it comes soon as I cannot continue to live this way. Has anyone been given medication for pain and nausea that has worked? My pain killers are ineffictive.
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SIH Diagnosis
My severe head pain started late February 2008. At the time I had a sinus infection that my General Practioner (GP) treated with antibiotics. After antibiotic treatment my severe head pain remained but sinus infection went away. I was sent to ENT to see if I was a candidate for sinus surgery. ENT after several visits and CT scan of sinus said my head pain was likely not sinus related. I was sent to neurologist who performed a sleep study and said I had sleep apnea. I also was searching the internet for severe head pain and all web sites were about migrains, tension headaches etc. but no reference to SIH. This was all I could take because my head pain was severe and so bad on some days I had to miss work (I do a great deal of traveling by air). I insisted my GP do a spinal tap to see if I had a brain infection. He also ordered an MRI without contrast of my head and neck. All tests were negative. I then insisted my GP refer me to Mayo. I arrived at Mayo on June 4th and they did an MRI with contrast and found the problem (SIH). It only took 2 days. My brain was sinking in my skull and I had two areas of fluid accumulation on the top of my brain. Next Mayo ordered a meylogram (dye injected into spinal cord with CT scan) to find location of leak. They said once it is found, they could do a blood patch or use fibrin glue or surgery as last resort. Meylogram showed no leak in visible part of spinal cord but there was a suspicious area in the part of the spinal cord inside the brain. I met with a neurosurgeon at Mayo to review meylogram results and he said they cannot do a blood patch or surgery in that part of my spinal cord as risks outweigh gain. I go back to Mayo on July 28th for a cisternogram with pledgets. If the leak is indeed in the brain, Mayo will try a general blood patch (however they indicate it generally is not successful unless blood can be injected at the site of the leak) but it is worth a try. In the meantime I was ordered to seek bed rest for the next 6 weeks to see if it heals on its own. The last two days I have developed nausea, and numbness in my left arm and leg. The severe head pain, sore neck, sore eyes and loss of hearing remain even when lying down. My heart goes out to all of you currently suffering from SIH and for those who have suffered and recovered. It finally felt good to get a diagnosis but I am still searching for my own recovery and I hope it comes soon as I cannot continue to live this way. Has anyone been given medication for pain and nausea that has worked? My pain killers are ineffictive.